Remembering Sydney

03 Aug Remembering Sydney

Saturday was a day of remembering. It was a day of smiles, a day of tears, a day of gut wrenching reality as our community joined together to honor a little girl who taught us all so much.

The 5K race at our home town summer festival was dedicated to a little blonde haired girl with sparkling blue eyes and a great big smile. Sydney Grace Potjer inspired everyone she knew to, in her own words, “never, Ever, EVER give up!”

Syd went to be with Jesus on Mother’s Day this year, just a few short months shy of her seventh birthday. But, as we all know, it doesn’t end there. Sydney’s legacy lives on. Purple was Syd’s favorite color and on Saturday, crowds of people filled the streets wearing purple shirts honoring Sydney and supporting the fight to find a cure for Spinal Muscular Atrophy.

Sydney had Type I SMA. It is a genetic disease that affects specialized nerve cells called motor neurons These neurons control the movement of voluntary muscles. In general, those muscles closer to the center of the body are more affected than those farther away. It steals the child of the ability to chew, swallow, sit and run.

Involuntary muscles, such as those that control bladder and bowel function, are not affected. Hearing and vision are not affected, nor is intelligence. As a matter of fact, these kids tend to be way more intelligent.

Sydney was smart. She was off the charts with her intelligence, personality, wit and charm and she was embraced, cherished and enriched by the best set of parents a child could hope for.

Saturday, as thousands of people lined the streets in preparation for the race, her dad spoke of Sydney. He shared with the community how one in four of us carry the gene, and how close SMA is to having a cure. He asked for support and hoped the money brought in that day tipped the kettle over the edge to achieve that.

In her memory, Syd’s parents started a fund at Sydney’s school to raise money for supplies and special equipment needed to help other special need’s kids for many years to come.

Betsy, you would have loved Syd. She was one in a million! I can’t even begin to tell you how sorely she’s missed. It was everything I could do to keep my composure on Saturday.

Sydney was adopted, and the day of the race, the first person I saw amongst the crowd of purple shirts was Syd’s biological grandma, tears rolling down past her dark sunglasses.

That’s all it took. For the first time since Syd’s passing, I couldn’t keep it together, couldn’t stop shaking, crying…. I think I’ve spent the past four months half in denial and half trying to support others.